I'm Aware That I'm Rare: the phaware® podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday!

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Canadian Natalie Roy is a former pulmonary hypertension
patient who received a double-lung transplant in September 2017.
She discusses having an identity crisis post PH.

My name is Natalie Roy. I live in Vancouver, British Columbia,
Canada. I was diagnosed with, what was called at the time, primary
pulmonary hypertension in 2005 when I was 20. Currently, I am one
year past new lungs. I just celebrated my one-year
lungiversary.

I just started fainting. I started noticing that I was having a
hard time walking up hills. At the time, I just wanted to avoid it.
I think I was scared, but I was like, "Oh, I'm just dehydrated, or
I need a nap, or maybe I haven't eaten enough today." I just was in
denial and altered my life patterns to better fit not walking up
hills or walking upstairs or whatever.

I fainted walking up a set of stairs. And somebody had called an
ambulance. I guess my lips had gone blue, and they couldn't wake me
up for over 10 minutes. So I got diagnosed in the emergency room
with six months to live, at the time without treatment.

I got on some oral treatment, and made a life change, and moved
to Alberta and went to school for chef's school. I did really well
for the first five years on just straight oral treatment. And then
I went to Australia for a year. And when I came back, I started
fainting again. So they put me on a secondary oral. That lasted
about two years, and then I started having symptoms and went on IV
medication for five years. And got listed for a double-lung
transplant November 1st, 2015. And received my lungs September 7th,
2017.

I had always told myself when my team tells me it's time, it
doesn't matter if I feel ready or not, then I'll just do it. If
they say it's time to go, then that's it. So when Dr. Levy started
talking about listing me, I was still working. I was still riding
my bike, still totally able bodied. And both me and my partner at
the time, we were like, "It doesn't feel like I'm sick enough." But
I went on the list anyways.

And we had a bit of trouble finding a blood match, which I
thought I had common blood type, A positive. But it's actually not
that common. I had an antibody that was also a hard match. So it
took us a bit longer. And in that 19 months I had one dry run,
which was where they prep you for surgery and then the organs
aren't viable, so they send you home. So that was devastating.

But in that 19 months I started getting very sick. And I went on
oxygen, and my lungs kept getting infected. And I had septic
infection that almost killed me. So my doctor, being able to
foresee all of those complications, or that actually you're sick
enough that if you start to go down, you'll go down very
quickly.

Because I had been sick for so long and my heart was in and out
of heart failure, and my insides were quite sick. But I'd never
looked sick. So I would say, "If transplant is something that is
right for you, then do it even if you don't feel ready for it." And
if you don't feel sick enough, because even with the survivor's
guilt stuff, where I was like, "But there's so many people that are
sicker," or, "Am I even sick enough for this? Is this the right
time?" The problem with PH is that you do go down fast. And you
don't recover.

For me, my journey was a little bit confusing because for the
first five years I was very much in denial, or I never wanted to
make a big deal about anything, or make anybody else uncomfortable
with me being sick. So I would say it in a way where I just had
this little lung disease, or I had this little thing, and I never
really felt like I was ever sick enough.

The thing is, is somebody will always be sicker than you. You
know. And it took just within the last month or two that I got
moved into a place where I felt that actually I was sick enough,
and I did deserve these lungs. And that it was okay that I got
them. And yeah, people are sicker than you, but that's life, you
know. And you're always going to be faced with that.

I think the survivor's guilt part was that I had friends that
are at end stage, and they are too sick to get transplant. And
they'd be diagnosed longer than me. And they've had a harder
journey than me. And I'm over here, riding my bike, and walking my
dog and living my life. And really feeling quite removed from the
sick girl that I was last year. Because life is so different now.
And I guess I feel guilty in that, at times.

When I got home from the hospital, and my partner said something
about when I had PH. And it hit both of us, like, "Oh my gosh." I'd
been sick for 13 years, and that was my identity, and I was very
active in the community, and helped co-running a support group, and
be in contact with anybody getting diagnosed. I’d go to the
hospital and talk to them, and give them my contact. Being active
and of service.

I think that when I got out of the hospital, and I didn't have
PH and a little bit of my online community, it felt more quiet. I
had a bit of an identity crisis, where I'm like, "Who am I?" I'd
been sick for so long, and then I was on the transplant list for
what felt like for so long, that that became who I was. And then
now I'm this person post-both of those things. And I think as long
as I continue to be of service, and to be a contact, and to love
and nurture my community, as well as share my blessings that I'm
experiencing. Because that is hope. Even though that feels
uncomfortable sometimes, I think that that's who I am in the
community now. So I'm Natalie, who's had a transplant, and used to
have PH.

Transplants been like such an obvious blessing. But it's also
been like a really big challenge from being listed and getting
really sick really quick near the end there. And then getting, just
the whole thing. I would say, yeah, make sure you reach out online.
If you're feeling isolated and overwhelmed because there was dark
times. There was times when I couldn't get out of bed because I was
so crippled with anxiety around dying. And the actual fear around
the actual surgery, which is really strange. And I definitely
learned some deeper things about myself, and was able to process
that through Generation Young Hope, through the other PHers
online.

About the Podcast

A new podcast series devoted to raising global pulmonary hypertension awareness with dynamic stories from PH patients, caregivers and medical professionals from around the world. New Episodes every Monday & Thursday.
Through this series of impactful, insightful and, most importantly, hopeful stories from members of the global pulmonary hypertension community, we hope to further the global #phaware conversation as well as to capture, engage and enable misdiagnosed and undiagnosed PH patients because early diagnosis and treatment can mean the difference between life and death.
Topics range from the importance of early diagnosis and global PH awareness, to the impact of clinical trials to how patient support and advocacy are paramount to battling this disease.
Learn more about PH at www.phaware.global